My personal adventures and lessons learned while beating the shit out of Stage 3 Melanoma

I lied and said I would get you guys an update over my spring break week (a week ago). But it turns out the place where we stayed had nonfunctional wifi, and also bad cell service so I actually ended up losing a large draft of this post while I was there and was too annoyed to get back to it until now. It was vacation after-all so spending time with my fam and snowboarding was the priority. Again, a lot of time has passed since my last update so here’s what’s happened since then.

Early February: Pituitary Probz

So a week before I posted my last update I had some alarming symptoms pop up…

Micro-burst headaches – 1 week after my last prednisone taper I start to experience what I call “micro-burst headaches.” There are one or 2 particular spots on my head that hurt kind of intensely for like 10-15 seconds, then it goes away. On bad days this would happen like 5-6 times a day.

Migraine aura/vision issues: I have a migraine like aura where I can’t see right out of my left eye and I have a pressure sensation and light sensitivity for a few days. The acute vision issues lasted for only a few minutes but was noticeably blurry for about 3-4 days afterwards. Also my pupil is bigger in my left eye. At this point I am alarmed but chalk it up to having my first migraine aura.

Almost passed out: 3-4 days after the migraine episode I go to a sculpt yoga class with a few of my teammates. I have been going to these classes for years and never had a problem. About 20-30 mins into the class when I pick up a heavy set of weights I start feeling extremely nauseated and light headed. I should mention that I am kneeling at this point. I drop the weights and I feel better instantly. I am fine during the next exercise where we don’t use weights. We do another exercise with weights and I am standing. I don’t even remember what exercise we were doing except that I start to feel very lightheaded and dizzy and I get the “feeling of impending doom” which is exactly what happened to me before I passed out last month. So I am an intelligent human and I just sit down on my mat before passing out and I feel better. I try using weights one more time and the same thing happens so I need to rest. For the rest of the class I don’t use weights and make it out alive. My friends also noticed I was acting strange and were watching me closely. I knew something was wrong, this had never happened to me and I wasn’t dehydrated/malnourished. My symptoms were directly related to physical stress I was putting on my body. At this point I was alarmed and emailed Dr. Lawrence and Riley about my symptoms and they had me come in the next day for labs.

Potential hypophysitis: Based on my symptoms Dr. Lawrence and I think it’s possible I have hypopysitis, which is a fancy word for inflammation in the pituitary gland. This is a very rare thing to happen to a normal person, but is quite common to have autoimmune hypophysitis for someone who has had treatment with ipulimumab (Ipi). This means my immune system might have started attacking my pituitary gland and maybe causing the headaches and the passing out.

I get an emergent Brain MRI, and the radiologist says there is “subtle” inflammation on one side of my pituitary gland, but this would be an “unusual presentation” of hypophysitis since it’s unilateral inflammation. SOOOOO they send me off to a a new specialist named Dr. Faje- a Neuroendocrinologist, who decided he wants to do a specialized MRI of just my pituitary gland where they inject contrast in a more controlled manner to better visualize the pituitary gland. They want to do this because everyone is confused by my symptoms/presentation. He says it may be possible I have a benign tumor there, but at this point we are pretty sure it’s not metastatic disease.

Left image: new MRI showing subtle inflammation on the right side of my pituitary gland. Right image – Brain MRI from October, pituitary gland looking less asymmetrical.

Not Hypophysitis! – the specialized MRI shows that it is pretty much similar to my last MRI so we say, okay I guess.

What caused all those scary symptoms?

Based on some other blood work and tests we had done in between all the MRI’s Dr. Lawrence and Dr. Faje and I all concluded that I was probably mildy adrenally deficient or suppressed after my last prednisone taper. Cortisol is a steroid hormone (gluccocorticoid) produced by the adrenal glands, which has many functions but it’s main function is to allow the body to respond to stress. ACTH is a hormone produced in the pituitary gland that stimulates the adrenal glands to release cortisol. Sometimes after taking prednisone (a synthetic gluccocorticoid, which is recognized by the body as similar to cortisol) your body will be slow to respond after a vacation and won’t produce cortisol like it once did. This is not a completely accurate description of cortisol and ACTH so if you want to learn more go to this website or google it.

Pretty much my body was slow to adjust after my prednisone taper which is why at first I wasn’t producing enough cortisol to respond to the stress I was putting on my body, which resulted in me almost passing out and being orthostatic and stuff. My blood pressure was really low those first couple of weeks and my cortisol stimulation test afterwards came back barely passing. I was producing enough cortisol at the time to manage normal life, but when stressed I was at a deficit. However, this has self corrected after a couple of weeks and I have been ramping up my workouts and preparing for Brute Squad tryouts which start in a couple of weeks!

I should mention that I am not having the fainting symptoms anymore which is great. I still have the “micro-burst headaches”, but they are happening less frequently and are not debilitating so Dr. Lawrence and I are just “watching” them.

Some Reflection

This whole pituitary problem went on for about 1.5 months or so which is why I gave my pituitary gland a name – Petunia. Petunia, Melanie, and Louise have been having some quiet ragers in my body the last year. I am very glad there is nothing actually wrong with my pituitary gland and as it turns out she is just naturally asymmetrical like the rest of my special body (see about me section and read about Sally).

This whole pituitary/headache scare however was another reminder in which the way a cancer diagnosis (specifically melanoma) will affect your for the rest of your life. You have to be vigilant about your symptoms when you have stage III melanoma because Melanoma loves to travel to the brain, liver, and lungs. Given my abrupt symptoms, my family was worried that Melanie had traveled to my brain. I was pretty confident it wasn’t a metastasis, but it just goes to show how any tiny little symptom can just blow up and be this huge thing.

I hate making a big deal out of little things, and I just want this all to go away. I didn’t tell my family right away about my symptoms and they were upset. I didn’t want to stress them out if it turned out to be nothing, which it pretty much was. So after we found out it was essentially nothing, I found myself to be both relieved and also simultaneously very upset/angry that I had to put my family through this roller coaster of angst with tons of tests, scans, and unanswered questions. It’s scary and annoying, that I have to take note of everything that happens to my body and link it as sign of cancer progression until it’s ruled out. This goes against my moral code of ignore everything, unless it can’t be ignored because you don’t want to waste anyones time or worry. I’m gonna stop complaining now because the truth is right now I have no evidence of disease and I’m going to enjoy that fact.

On a completely different note- funny short story: Lege and I planned to watch this movie called “Arrival” at home one friday night. Right before we start it up Lege mentions to me that his parents warned him of a small “cancer scene” and I was like pshhhh, whatever, I can handle it lets watch the movie already. This is not a spoiler alert – but if you’ve seen the movie than you know the first 3 minutes of it are essentially a montage of a close mother-daughter relationship, which starts off really warm but then the daugher gets cancer and dies abruptly in her adolescence. Let me remind you this is the first 2-3 minutes of the movie. So I thought I was gonna be okay, but it’s really well done and Lege looks over at me and my face looks like I’ve just stuck my head in a large body of water. I was both sobbing and giggling about how wrong I was about how I could handle a little “cancer scene.” Lege paused it and we cried and giggled at my ridiculousness for a minute or two and were able to watch the rest of the movie without any problems. Anyway, great movie, I highly recommend it!

9 Month Scan Results!

Right before I went to Utah on spring break, I had my 9-month CT scans of my neck, chest, abdomen, and pelvis. I also had my 9 month skin check a couple of weeks before that. The point of these scans are to make sure I haven’t progressed to stage 4 disease (meaning that cancer hasn’t metastasized to a distant site or organ). The skin checks are to makes sure no melanoma pops up or spreads superficially. Melanoma is well known to spread quickly and quietly to organs, which is why scans happen so often in the first year. Last week I got my results which were CLEAN AF! This is excellent news, meaning I continue to be at NED status (No Evidence of Disease)! Since Melanoma is such a bitch and has such a high recurrence rate, they don’t often use the language like “cure.” So for now while I am NED status, we still monitor me pretty tight for the next 5 years to make sure I stay that way.

What’s next?

For the first time since I started this journey, I don’t have anything scheduled until 3 months from now (unless some new weird symptoms occur before then – knock on wood)! In June I will celebrate my cancerversary and have my 1 year CT scans, blood work, and Brain MRI! Until then I should finally have some time to post guest blog posts (up next is my Aunt Val who wrote a great post about her visit to the Dermatologist)!

Until then, stay sexy and fuck cancer!

Life Updates/Pictures

School – I am loving NP school for the first time. Not that I didn’t like it before, it was just very stressful. I am now less stressed, and am doing very well in class and am intellectually stimulated and loving my clinical and feeling like I actually know shit and can take care of patients. Considering working in dermatology in the future!

Ultimate: It’s the worst time of the year. I am training, alone for tryouts. There isn’t much rec frisbee happening which means I am having to do awful sprint workouts and stuff when you feel slow after the offseason. Tryout time is stressful but I plan to tryout for Brute Squad again and I’m really excited to see all my old teammates and frisbee peeps in general which starts in 2 weeks! Wish me luck!

Wedding – The momsquad is killing it and Lege and I have barely had to do anything. We got a venue and a date. No complaints here!